Bicalutamude and breast pain/growth - how soon? - - Page 2Localised cancer

User

Posted 03 Feb 2018 at 22:40

Push for the 20mg weekly Tamoxifen ?

If life gives you lemons , then make lemonade

User

Posted 03 Feb 2018 at 23:05

I hear you Chris

I start Radiotherapy on Wednesday but will be push push pushing for 20mg

Personally I think it’s absolutely ridiculous that prophylactic treatment for this serious side effect is not given high priority

Lyn stated that John was totally refused tamoxifen or even radiotherapy to breast area - absolute joke tbh

User

Posted 04 Feb 2018 at 10:11

My nipples were zapped early on, around the time when I started HT, and before RT. I gather this is the normal way to proceed. That said, there is good reason for reviewing the procedure; see http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0136094 The RT to my nipples did not stop the pain or growth at all. I did get some interesting red rings, and was told that if I go topless in the sun at any pint for the rest of my life, I will need some serious factor suncream. So for me, nipple RT was an all round failure.

I agree with your view that oncos don't appear to give this issue equivocal significance, which is a shame. It appears that many men are suffering unnecessarily. Perhaps it's worth printing off the above article to present to your onco? I talked through the issue (quite firmly) with my onco, who then prescribed me 10mg Tamoxifen daily. This has worked a treat, no complaints at all. The only possible side effects I have had are fatigue and hot flushes, but my suspicion is that is down to the Bicalutimide. Interestingly, I've just had ear-based acupuncture for the flushes, and it works!

User

Posted 04 Feb 2018 at 11:21

Thanks for the info Graham, I can’t understand why I’m being given 10mg weekly when the issue is steadily worsening

I mean surely if oestrogen is affecting me then taking a pill once per day isn’t going to make a difference for the remaining 6 days

But I will take that journal article to my next meeting - and be very firm about what treatment I need for side effects

Edit:

I just read a San Francisco article stating that Tamoxifen has a half life of 6-7 days so weekly dose makes sense now

https://journals.lww.com/oncology-times/Fulltext/2004/07100/Early_Data__Tamoxifen_May_Reduce_Symptoms_of.11.aspx

Edited by member 04 Feb 2018 at 11:33 | Reason: Not specified

User

Posted 04 Feb 2018 at 13:40

I think you also need to keep in mind that some men get no breast problems while others are massively affected and neither RT or tamoxifen are an absolute cure for everyone - it may be that you are going to have moobs whatever treatment or dose you are offered. The men on here that have coped best over the years were the ones that accepted breasts as evidence of the PCa being treated, in the same way that impotence or loss of libido is.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Feb 2018 at 16:36

Originally Posted by: Online Community Member

The men on here that have coped best over the years were the ones that accepted breasts as evidence of the PCa being treated, in the same way that impotence or loss of libido is.

Im not sure what you mean Lyn, are you saying that men should accept the side effects of pca as inevitable without seeking ways to help?

I mean I know that there is huge variety in how things affect people but I don’t want to just give up at 48 and not try and get help with the pain and discomfort - as well as the body image part of it

Maybe I should, but it’s difficult for me to give up and accept the ravages of this disease as inevitable - they probably are but if there’s a chance at a better QoL then I feel I need to go for it - anything else would feel like giving up to me

User

Posted 04 Feb 2018 at 17:34

No, I am saying that neither tamoxifen or RT are guaranteed to help and we have seen members in the past who experienced significant distress due to their moobs while others weren't really bothered by it. Absolutely right to do what you can to mitigate the side effects but also you need to keep an eye on your mental wellbeing - don't set too high expectations of the treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Feb 2018 at 18:16

Ah I got you

Yeah you’re correct for me to be not over optimistic

User

Posted 30 May 2018 at 00:33

Just a wee update

had my oncology review 8 weeks after RT, all seems ok, bladder and bowel seem back to normal, still feel more tired but that may be the bicalutamide

worst symptom by far is the nipple pain/breast growth. So self conscious about it now. I was on 20mg tamoxifen weekly but today put on 10mg daily - so I’m hoping the nipple pain goes away

as for the growth? Well reading up on it some people return to normal with tamoxifen or when bicalutsmide stops, some stay with permanent moobs, so who knows what I can expect - I gave another 18 months of bicalutamide

but hey ho, could be worse, I have no immediate problems with bowel/bladder, can still have full normal sex, and libido is at a good level so I’ll take that

Edited by member 30 May 2018 at 08:52 | Reason: Not specified

User

Posted 30 May 2018 at 14:34

Been off the bicultamide and tamoxifen(daily) for two months now.I still have sore breasts behind the nipples and if anything I feel they have got even more tender, no sign of them shrinking yet.

As you say it could be worse. I am off on holiday in another month and as i am conscious of these moobs i shall be wearing a rash vest around the various pools.

I went to usa last year and quite a few men were wearing these swimming t shirts. Fellow PC? Sufferers. Who knows?

Edited by member 30 May 2018 at 14:35 | Reason: Not specified

User

Posted 30 May 2018 at 18:00

If the growth doesn’t reduce then I will be exploring the surgery route

User

Posted 30 May 2018 at 21:13

Bill

Been on bicalutimide now for three months. My nipples are hard and sore. I've been on tamoxifen 20mg weekly from the start.

I've had 20 radiotherapy sessions with 13 left to go. Had to have an emergency meeting with my urologist as I'm finding it practically impossible to hold my 3 glasses of water even though my bladder isn't full. I just pee constantly. If I take a drink, 5 minutes later I'm away to the toilet. I've almost wet myself on the radiotherapy table on several occasions.

Prescribed mirabegron and solifenacin today to try to overcome the problem.

Ulsterman

User

Posted 30 May 2018 at 23:15

Hey Ulsterman

sorry to hear that you are having difficulties with the RT. Mine wasn’t too bad but my sessions were all at 9am and I did find that the extra drinking of fluids plus the radiotherapy made me pee frequently for several hours afterwards, I think the RT irritated my waterworks

but it wasnt as bad as you are experiencing but hopefully it settles down after the RT

Edited by member 31 May 2018 at 07:58 | Reason: Not specified

User

Posted 01 Jun 2018 at 23:29

I thought moobs were a permanent side effect although the pain should stop once HT finishes. What does PCUK say?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2018 at 12:56

Unfortunately I think you are correct Lyn

your husbands remained the same after stopping HT?

User

Posted 02 Jun 2018 at 14:40

Don't know if this is relevant as I was only on bicalutamide for 6 months. Some pain although tolerable and this disappeared on completion of the course. I do have some residual enlargement.

My brother's PSA has started rising after his treatment back in 2013 (high dose brachytherapy, 15 sessions of ERBT and 2 years bicalutamide) and he has been put back on bicalutamide. In the light of his previous issues with bicalutamide he has been prescribed tamoxifen this time round without having to ask for it.

User

Posted 03 Jun 2018 at 20:57

Well there is some good news, after almost a week the daily 10mg dose, the pain is starting to ease off a bit, it would be great for it to disappear altogether

Edited by member 04 Jun 2018 at 10:55 | Reason: Not specified

User

Posted 04 Jun 2018 at 00:05

Originally Posted by: Online Community Member

Unfortunately I think you are correct Lyn

your husbands remained the same after stopping HT?

Yes although he already had big pecs from the rugby & gym so over the years since, he has done a lot of work and just looks stacked :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Jun 2018 at 19:46

On a different note,I’ve noticed over the past week or 2 that my chest/arm/leg hair has thinned out and decreased

only noticed it after starting daily 10mg Tamoxifen but I think it’s more likely to be the Bicalutamide?

Plus, tiredness and muscle weakness seems more difficult than pre- HT

User

Posted 11 Jun 2018 at 17:12

Update

pain seems to be gradually diminishing but still quite sore and tender at nipple buds, less than before though

moobs are there, not huge bit bigger than before. I’m also probably about 7 to 10 lbs overweight so about to start a renewed exercise and diet change regime to see how that affects the appearance

i need to be careful though since the bicalutamide has caused low iron/ haemoglobin and also low white blood cell count

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Bicalutamude and breast pain/growth - how soon?

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